Mesenteric Panniculitis or Sclerosing Mesenteritis

I was diagnosed with follicular lymphoma in February 2023. Scans show "misty mesentery". I completed treatment for the lymphoma, but I believe I am having symptoms related to the mesentery and will follow up at MD Anderson for a deeper look. I am struggling with bloating and some foods are causing significant discomfort. I currently have very limited information and don't really have a diagnosis related to the mesentery at this time. I am using a trial and error method for managing my diet. Watermelon has caused the most discomfort. Hoping for lots of discussion in this group!

Hi @laffitsy . There are great docs at Mayo who deal with MP. Foods that are typical triggers are spicy, dairy, fried, gluten and alcohol. Hydration is absolutely critical and a bit of exercise keeps everything moving as well. I highly encourage you to also decrease your stress level. Good luck!

Hi I have Graves’ disease, and now been diagnosed with MP it’s new to me the pain nausea and feeling so sick every day, is there anything you do for it which could help please.❤️

I have recently been diagnosed with MP seen on two CT scans and just been referred to Mayo. My blood tests were normal as well. I’m having trouble with fevers, exhaustion, abdominal pain, headaches, loss of appetite, and weight loss. Really struggling to get answers in Iowa where I live. Haven’t been given anything that helps me and been sick for 6/7 weeks now. I’m hoping I get into Mayo soon to figure this out so thank you so much for writing this as I was starting to feel hopeless. Anything you can share would be great! What got me is the eating big meals made u feel extremely full that’s so spot on. I can barely eat anything. Doctors seem to not know what to do

Hi I was diagnosed with acute MP 4 months ago it’s been a living nightmare, been on steroids for the past 2 months but really they have done nothing, they are operating next month to do biopsy on my Mesentric and lymph nodes around it , they want to start me on a drug called Puri-Nethol I’m a bit worried about it but the specialist said it will help me, it’s a horrible disease the only thing we can do is just keep trying and investigating new approaches to it.❤️💚

Did yours just suddenly start causing you issues? Mine suddenly just showed up in Labor Day weekend and pain just won’t go away. Constantly getting stomach pains and fevers. I’m hoping Mayo accepts me as a patient as it’s been on my CT scans twice and I’ve been to specialist and ER around my house and nobody does anything. I was supposed to hear from Mayo this week but didn’t. It really is a horrible experience so far hopefully you can find some relief. I’ve completely changed my diet. I don’t do meat anymore at all.

Hi there mine all started one morning I woke up and I thought I was ok then all of a sudden a started to get bad pains in my stomach then a really bad case of dirreah like I got some stomach bug, that lasted a day then all of a sudden I was getting really bad pains in my right side I thought it was my diverticulitis but no I went to hospital and they did a scan and it came back saying acute MP it’s been all down hill since then , yes I’ve changed the way I eat and I limit red meat, sugars, don’t drink coke any more alcohol, I cook all my own foods, I get pain every day some days are a lot worse then others, your whole life changes from what you eat to what you do, the key to it all is try to stay positive it’s hard but you can do it limit stress as much as you can to, I will let you know what happens with my operation and what they find , take care ❤️

Thanks hopefully they find some ways to ease your symptoms. How long after doing the admissions did u get into Mayo? Did you have to stay a week initially or make any other trips?

Appreciate the conversation about this as I basically hear “it’s rare” or “not sure what we can do” from ER doctors and others around here. Nice to know there’s someone else having the same things happen. You’re right about the stress my work has been great about it so that helps. Good luck and keep in touch

I have been recently diagnosed... I do have another autoimmune disease - mixed connective tissue disease. the GI Dr prescribed Prednisone to start with, I have been taking that for just over 30 days now. Will begin taking Tamoxifan this month, after 2 weeks I will begin reducing the Prednisone (by 5mg every 7 days).
I asked about changing my diet, he said the diet has nothing to do with it...
Anyone else taking tamoxifan?